Search found 49 matches

by fuz_mind
Wed Sep 13, 2017 5:42 am
Forum: Prescription Medications
Topic: drug holiday
Replies: 9
Views: 293

Re: drug holiday

thanks Beth!
by fuz_mind
Tue Sep 05, 2017 3:43 pm
Forum: Prescription Medications
Topic: Wellbutrin (bupropion)
Replies: 4
Views: 857

Re: Wellbutrin (bupropion)

my doc who prescribed wellbutrin says it helps with some but not all her rls patients.... but my doc says it helps with pain perception so i guess if your rls is painful, that might help a little

my pain worsened slightly when i cut the wellbutrin dose but no changes in mood. hope this helps
by fuz_mind
Tue Sep 05, 2017 3:39 pm
Forum: Prescription Medications
Topic: drug holiday
Replies: 9
Views: 293

Re: drug holiday

Does your doc at least support the notion of a drug holiday? Point him to the webinar or (if he's like me and can't stand watching things that could be skimmed from text in a tenth of the time) the Foundation brochure on drug holidays. Beth: his idea of supporting me is to cover me with medical lea...
by fuz_mind
Sun Sep 03, 2017 1:55 pm
Forum: Prescription Medications
Topic: drug holiday
Replies: 9
Views: 293

Re: drug holiday

not sure if i am augmented.... neuro doesn't think so. thinks it's natural worsening. Holland: no opiods; have a low dose of lyric, zopiclone and tons of clonzapam and tramadol for standby..... i'm braving myself for the worst.....but Steve is probably right... i should get someone to hide the ropin...
by fuz_mind
Sat Sep 02, 2017 2:31 pm
Forum: Prescription Medications
Topic: drug holiday
Replies: 9
Views: 293

drug holiday

i will be doing a drug holiday from 1mg ropinirole, 2 weeks before a second round of iv iron.

any advice or tips on how to survive the above? or even how the experience is going to be like?


Thanks!
by fuz_mind
Sun Aug 20, 2017 9:37 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 20
Views: 1429

Re: Rate of Ferritin Decline

Well, for most people getting their iron level up with oral iron is at least a time-consuming and sometimes difficult due to stomach problems. Most people on these boards that want to have an IV iron Infusion have difficulty persuading their doctor to do it. Seeing as how your doctor seems agreeabl...
by fuz_mind
Sat Aug 19, 2017 2:58 pm
Forum: Prescription Medications
Topic: tapering off ropinirole
Replies: 46
Views: 2446

Re: tapering off ropinirole

Polar Bear wrote:The movement disorder specialist suggested upping your ropinerole to 1.5 mg.!! Oh dear, another specialist who needs educated.
How good to know that you were well informed on the usage of ropinerole.


yes.... :) with a huge sigh of relief !
by fuz_mind
Sat Aug 19, 2017 2:50 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 20
Views: 1429

Re: Rate of Ferritin Decline

Hmmm... by usual measures your iron saturation is low. This indicates that while your ferritin ordinarily would be considered okay, it is likely artificially elevated. Likely that means that your ferritin is definitely on the low side for somebody with RLS. If you haven't had any iron infusions, pe...
by fuz_mind
Fri Aug 18, 2017 9:57 am
Forum: Prescription Medications
Topic: tapering off ropinirole
Replies: 46
Views: 2446

Re: tapering off ropinirole

Yes, I can tell that he doesn't get it. From what you've said, I would suggest your priority be to find a new doctor because this one might actually cause you harm, since he refuses to acknowledge the existence of augmentation. And I made a mistake, see edit in previous post no worries! i did think...
by fuz_mind
Thu Aug 17, 2017 5:11 pm
Forum: Prescription Medications
Topic: tapering off ropinirole
Replies: 46
Views: 2446

Re: tapering off ropinirole

I fear for you under the care of that doctor, because he does not seem to know something even more basic: that ropinirole causes augmentation of RLS symptoms in most patients, that augmentation can happen in as little as a few days or may take years, and that augmentation can't be successfully trea...
by fuz_mind
Thu Aug 17, 2017 4:58 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 20
Views: 1429

Re: Rate of Ferritin Decline

update from my original post im stuck in no man's land now with all my iron indices on borderline low Aug test results ferritin - 121 tibc - 304 fasting serum- 55.8 iron saturation - 20% my symptoms have been worsening although my doc attributes that to me cutting my requip to 1mg doc offered me iv ...
by fuz_mind
Thu Aug 17, 2017 4:47 pm
Forum: Just Joined?
Topic: RLS only in feet?
Replies: 13
Views: 443

Re: RLS only in feet?

When I was a patient of Dr Ondo in Houston he ordered blood tests that included all four of the tests that are mentioned in Dr Earley's video. I never saw the results of that set of tests, but at my next appointment Dr Ondo mentioned that my results were fine. I know that my ferritin levels had ris...
by fuz_mind
Sat Aug 12, 2017 10:22 am
Forum: Prescription Medications
Topic: tapering off ropinirole
Replies: 46
Views: 2446

Re: tapering off ropinirole

see his colleague who is a movement disorder specialist.... only to admit that his colleague is more familar with parkinson than rls... Well see him anyway! He might know something about WED/RLS or be willing to investigate, and he might be willing to prescribe a real opioid. Meanwhile, will your ....
by fuz_mind
Sat Aug 12, 2017 9:57 am
Forum: Prescription Medications
Topic: Infusion Update
Replies: 77
Views: 6155

Re: Infusion Update

To add to that, some people need a measure of 75, some 100, some 200. At Johns Hopkins, Dr Earley notes the level at which they are diminished and then keeps the ferritin at least that high. For me, this is over 200. hello viewsakew, i don't think I really understand the above very well, do you min...
by fuz_mind
Sat Aug 12, 2017 9:53 am
Forum: Just Joined?
Topic: RLS only in feet?
Replies: 13
Views: 443

Re: RLS only in feet?

Dr B checked all four, too. Here is a quote that might help: "All patients with symptoms of restless legs syndrome (RLS) should be tested for iron deficiency. [3, 4] At a minimum, a ferritin level should be obtained. A complete iron panel, including iron levels, ferritin, transferrin saturation...

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